I am Not my Illness

I have not shared much about my having epilepsy in the past. In fact, I may not have mentioned it at all. Usually it is something I keep close to my chest and do not discuss with most people, not because I am ashamed of it, but rather because I feel like once I do I have a scarlet ‘E’ emblazoned upon my breast. When you have an illness people treat you differently, so I prefer to keep it to myself.

I first had a seizure at age 26, while sitting in my boyfriend’s (now husband) car at Sonic waiting for the carhop to deliver our food. All I remember is having a conversation and then the odd sensation of feeling my head turn to the right all on its own, as if someone pushed it, and not being able to make the words I was trying to speak come out of my mouth. My husband says that I shook for a little bit and was unresponsive and he called 911. A while later I remember an EMT at my side asking me questions but being unable to move or respond.

I would have at least three more seizures similar to that, although at home. One happened while I was lying in bed taking a nap. When I woke I had a feeling that something was not right. I tried to move and could not; I tried to speak and I could not. I attempted to yell to the next room where my boyfriend was playing his Xbox 360, but I could not make a sound. Finally I was able to pull myself up out of bed and drag myself to the kitchen where he could see me through the doorway. The feeling of not being able to move or speak but be fully aware of it is so incredibly frightening. It is what I imagine a patient under anesthesia who wakes up during surgery must feel.

My seizures have largely been under control for several years with a combination of medication and a vagus nerve stimulator implant (VNS), although I sometimes have a seizure aura- a warning feeling that warns me before a seizure occurs (similar to an aura a someone might experience before a migraine). My auras cause me to say something that doesn’t make sense, make me unable to read or write, or sometimes cause me to not understand what others tell me. When this happens I can take extra medication and use a magnet to trigger my VNS to give me a shock to prevent a seizure.

Unfortunately, recently I have had two seizures at work. These were different than ones I have experienced before. One was a little over a month ago. I had gone to a clinic to speak to someone and, so they tell me, I started to trail off what I was saying, turned my head to look at the wall, and would not respond. Unsure whether or not to take me to ER next door, somehow they were able to get me to unlock my phone and they called my husband who works at the same facility. A provider sat with me until my husband arrived and took me home. I slept it off and was fine. The next seizure happened like the previous one. I went to a clinic and was working with a CNA when she says I quit talking, stared at the wall, and would not respond. She found a doctor, they wheeled me to ER, and someone eventually called my husband.

I saw my neurologist, who prescribed another medication and so far so good- except that I cannot drive for at least six months. She told me that I need more sleep (ha! Tell that to my teething fourteen month old), I need less stress (ha!), and that I need to finish weaning my son due to the hormone prolactin and how it affects the brain (we have been weaning but still hadn’t been able to break the nighttime feeding).

There is an emotional toll to my illness. I get angry that my brain can misfire on me with no notice. I get frustrated that I can’t drive and do things alone. I worry that I will have a seizure and accidentally harm someone else, or harm myself and not be able to be there for my children. I worry that I will pass this on to my children. I hate that I must depend on mediation and an implant to be “normal.” I dislike that my husband worries about me. I don’t think many people realize how frightening it can be if you have seizures or Epilepsy. I am often afraid that I will have a seizure around my kids, or a seizure in the bath, or while driving, or while out for a walk. I have been so worried that I would have one at work and now it has finally happened, twice. It is expensive- not only do I have to pay for two daily medications but I also must have regular visits to a specialist and must have surgery to replace the battery for my VNS. I worry that something will happen to my job or my husband’s job that will make my medical expenses unaffordable, plus I now have to pay for an $800.00 ER visit where nothing was done for me except drawing my blood and giving me Tylenol for my headache.

Yesterday I happened to go back to the clinic where my last seizure occurred because I was scheduled to train someone. Everyone had to stop and talk to me, ask what had happened, try to hug me or pat my back and say, “Oh, you poor thing.” I am grateful for their help and thankful for some of their genuine concern, but now they will always know me as the lady with seizures. When I first had seizures my coworkers, friends, and family treated me with kid gloves. I felt like I was constantly walking on eggshells, trying to act as normal as possible so everyone would treat me normal and being so angry when they didn’t.

Now I am used to sometimes having to explain my illness or smiling and thanking someone for their concern. I don’t get as upset when I inevitably get questions like, “But surely you can’t…”

At times it makes my husband upset when I try to do everything for myself and do not ask for help or not let him take care of me. But that is just me and the way I am. I don’t let my seizures hold me back and I refuse to be defined by them. I will live as full and untethered life as I possibly can.

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